Monday, December 26, 2005

My Neutrophil count is borderline Neutropenia. My Doctor is being cautious. How can one, outside the insurance industry, complain about that? So he gives me the "revolutionary" new drug called Neupogen, developed by Amgen. It's a Recombinant Granulocyte Colony Stimulating Factor (rG-CSF) derived from E. coli.

So, Correct me if I'm wrong, my Science Geek friends:

I inject myself SubQ and this crap worms its way to my Bone Marrow where it stimulates production of Neutrophils. I might have to look into this. Very neat "trick". Very revolutionary. Wonder what they did before this development. Anybody????

Unfortunately, the syringe SUCKS ASS!!!!!!!!!!!!!!

Anyone who has done injections, or seen a syringe, knows what a classical syringe looks like. This ain't it!

It's a 1ml syringe with a 27 gauge needle. it's tiny. I only need .5ml inject. The syringe comes prefilled. The syringe has an obnoxious orange "needle guard" around it. The guard makes the syringe rectangular, not round. Each syring, has the drug information in it, a big fat label. The volume does have to be adjusted, there is air in the syringe. the label and the Guard make it difficult to see anything else. Like to make sure you have no air in the syringe or that the right volume is prepared. you know, the kind of important stuff. All this also makes it difficult to see if you are in a blood vessel before you dose yourself.

One checks for blood by sticking it in and then pulling back on the syringe. No blood, no vessel. No vessel, you can inject.

The guard moves easily. If it moves over the needle and locks then your done and the dose is wasted. I guess this was developed for the mentally challenged that stuck themselves in places they weren't suppossed to. The Syringe plunger seems to have been developed for people with...............hand/coordination difficulties, perhaps?

Overall, If Revolutionary means "Awkward as Hell" then this is one Revolutionary Syringe.

All in all, I would kill for a simple TB needle and a bottle of the drug.

I'm supposed to stick myself in a different place each day (5 days total). I can choose from thighs, abdomen (2 inches from navel), upper butt, back of arms.

First day:Left thigh. No biggy. Hesitated at first but then plunged right in. didn't feel much.Second day: Right thigh. It sucked! Don't know why but it was more awkward. I know I could do this with a nice, classical syringe. I got it on the 3rd try. Third Day: left side 'o' abdomen. Awkward again but got it on the 1st try, conditionally. I had to hold the syringe while Dani pulled back to see if I hit a vessel.

You know what hurt through all this? Not the sticking. The needle slowly coming out before dose delivery hurt quite a bit. Even the 3rd day, when I slowly inserted the needle into my abdomen, didn't hurt. The Fuck ups hurt. Interesting, no? Might have something to do with muscles tensing up as I realize I'm gonna have to stick myself again.

For my last two doses Dani may have to do it. I mean, If I decide I need to go into Virgin sights. She thinks it'll be no problem. I trust her. Wonder what happens if I deliver it into my blood stream????????

It wasn't easy. Neither Dani nor I like Diamonds. You ever been to a Jewlery store? Everything has frikken diamonds in it. After my 6th store or so I finally said; "I want a Sapphire ring with no diamonds." They complied. The Saleswomen showed me some stones and actually talked me down from the pricier two I was looking at. "Too dull to stand alone", She said. I thanked her for her honesty and then asked, "what about the band?" "We'll put it in a White Gold Tiffany setting", she said. I replied: "Sounds good. What exactly is that?"

Yes, I'm kinda new at the ring thang.

She showed me an example and I fully approved.

Christmas day. The ring was not under the tree. I suspected Dani was kind of suspecting it. So I waited until we had opened all our gifts. She was looking.........slightly............like what one might look if they did not quite get what they were hoping for. Happy but she could have been happier. She went to the Kitchen and I slipped the ring box under the tree. Dani came back to the couch. I thought I might wait to see if She might discover it. But the tension was killin me. Finally:

pj: "Dani, what's that under the tree?"Dani: "What?"pj: "That!"Dani: "Did we forget something?"

She wasn't going to leave the couch. So while I sat kneeling next to the tree, I pulled out the ring box and the rest is too mushy for my He-man/Macho image I've cultivated on this forum.

Neutrophile - The Major class of Phagocyte/Bacteriocide(sp?) in the Periphrial Blood system. or for the Scientists: It Eats Bugs dead. First responder, activates Complement, blah, blah, blah. No way am I gonna try to explain Complement here.

BTW - I'm really Loopy and my knees hurt. i feel semi-drunk. :D

Anyway - They gave me a script for this "revolutionary" drug that boosts the immune system or your money back. "Revolutionary" skeers me. Probably causes cancer.

LMFAO! I Kill Me!!!!!!!!

I just have to inject it subcutaneously over 5 days. Thighs, abdomen, back of upper arm(??????). How many animals have I stabbed? I worked in Pharma for four years. I've use a needle countless time. This should be interesting, no?

I have to start it Saturday. I think my "Insurance" had a heart attack with this script (cost?). They want to talk too my Doc before they approve it. Fucking assholes! After the Revolution The Insurers will be the first against the wall. Then the Lawyers.

The problem is taken care of on Friday and I'm able to get my drug. A friend who works in cancer research thinks its assinine that the anti-neutropenia drugs aren't Prescribed prophylactically since it's so common. Insurers, I'm sure are the reason.

This has got to change. No way does it take 3hrs to make my drugs. I'm not going to yell at the BMTx crew, 'taint their fault. I'll save it for Infusion. Before I could ask the Nurse assumes I recieved anti-nausea drugs but it wasn't documented. I say Thanks for asking, yes, I need the drugs. So, the 1st session - no anti-nausea, 2nd session - anti nausea but no documentation.

Maybe they just want me to color all of Georgetown with my stomach contents?

1530 - Done with chemo. 3 hours of waiting and 3 hours of treating. How efficient. This time we did bring reading material and a lunch. They did try and serve us Hospital food. I declined.

The chemo side effects hit quickly this time. Severe Fatigue, dehydration, memory issues, pain in my knee joints, sensitive tongue. I pee so much I'm up to 4-5 bottles of Gatorade/day and losing the battle. Insomnia will be a bigger issue and I'll go from benadryl to Sominex (sp?). Which is benadryl x 2, literaly; has double the active ingredient of benadryl.

Theory:The chemo side effects hits quicker, I believe, because one responds to chemo. I've responded "extremly well". less Cancer cells means the drugs are "hitting" healthy cells/tissue with greater intensity. I get the same dose until my next CT/PET Scan which comes a week after my 4th treatment. It would be nice if they did a scan after each treatment. they probably don't for short term savings. Long term loss - excessive chemo leads to future cancers. Wonder if Insurers are behind this?

Up against the wall, puhleeze.

Hair still isn't looking so bad. Not growing at all, thinning slowly.................so far. Might shave my face for the hell of it & then maybe I won't have to shave for a long time. I look like a youngen, it's short, and sparse in areas. I feel like I should go talk to my hairdresser. I've been with her for 6yrs.

Plus facial hair kind of masks the scar where they took my Lymph Node out. Takes away from my Badass look. I figure in the city people might think I got slashed. In the Backcountry I'll tell people it was from a bear with an extra long middle finger. :D

But I am Getting Fat!!!!!!!!!! Yes! 2 weeks ago I weighed in at 152. Today, 162! I like to be @155. We didn't believe I weighed that much and my Dr. agreed to have me weighed again. I think a 10lb. weight gain after 2 treatments is unusual. I have loss my appetite, in a mild way, but I know I should eat. In fact, Dani is trying to fatten me up more. The theory being that at some point I will most likely have a problem with eating and need the extra weight. if not, then I'll be a Fat Chemo Patient and lose it afterward. I promise! Thank God one of us is thinking straight. Dani's making Christmas and Chocolate Chip Cookies. Might put some in a Bowl with some Ben & jerry's Ice Cream. ;)

I'm tired so I might have to lay.............lie................make myself comfy on the couch.Peace. And Remember what doesn't kill you will probably kill you later. Hopefully much later. :)

AdriamycinIt is is a cytotoxic anthracycline antibiotic isolated from cultures of Streptomyces peucetius var. caesius. As such, it is an antineoplastic - adriamycin interferes with the growth of cancer cells. It is one of the older chemotherapy drugs, having been in use for decades for several types of cancer.

Short Term Side Effects: Common: nausea and vomiting (ask your doctor about drugs to counteract nausea), sores on mouth & lips; Less Common: cough, fever/chills, fast or irregular heartbeat, swelling of extremities, diarrhea; Rare: black stools, blood in urine, pinpoint red spots on skin, unusual bleeding, wheezing, skin rash/itching. Adriamycin may turn the urine red which is not blood and should disappear within 2 days.

Long Term Side Effects: hair loss (alopecia) during use - hair growth should return late in treatment or after treatment, possible sterility (weaker than some drugs) and heart toxicity

BleomycinIt is an antineoplastic - bleomycin is an antitumor antibiotic, interfering with the growth of cancer cells.

Long Term Side Effects: hair loss (alopecia) during use - hair growth should return after treatment and lung (pulmonary) toxicity

VinblastineAn antineoplastic, vinblastine interferes with the growth of cancer cells - it does this by inhibiting microtubule production on cells. It is in the vinca alkaloid family. Originally derived from the Madagascar periwinkle plant Catharanthus roseus.

Long Term Side Effects: hair loss (alopecia) during use - hair growth should return after treatment and lung (pulmonary) toxicity (doses should be monitored), peripheral neuropathy (tingling & numbness in the hands and feet).

DacarbazineAn alkylating agent, it functions as a methylating agent after metabolic activation in the liver. Dacarbazine is also used to treat melanoma, a cancer of the skin.

Short Term Side Effects: Common: Redness, pain, or swelling at the site of injection, nausea, vomiting. Less Common: black stools, blood in urine or stool, cough, fever/chills, lower back/side pain, painful or difficult urination, pinpoint red spots on skin, sores in mouth and on lips.

Long Term Side Effects: Some hair loss which should return after treatment, transient (shorter term) reduction in liver and kidney function.

Wednesday, December 21, 2005

Vicodin doesn't really seem to help my insomnia. I've decided to sleep whenever I can. Hoping to get 8-10hrs/day. I lay on the couch and seem to be on the razors edge between awake & not. Kind of dreaming but conscious. Kind of..................drugged? It's the fatigu and drug working on me.

My Fatigue & shortness of breath seem worse. I can't walk 30 minutes without having to rest. I seem to still have most of my hair but my facial hair has stopped growing dramatically. I have scruff but I can't remember the last time I shaved. The tip of my tongue is sensitive. Spicy foods are too much.

Monday & Tuesday night I decided to help the Vicodin with some Makers Mark. I had half a shot on Monday. I crashed at 12:30AM, way earlier then usual. I wake up at 10AM. That Was Awesome! And I feel fine........except for a little toothache. I pop a vicodin.

I really don't remember much of Tuesday. I think everything is just kind of melting together. Oh wait.............we went christmas shopping and grocery shopping. Victoria's Secret at Pentagon City can kiss my ass. Bunch of dumbasses work there. Didn't do much else. Tuesday night, around 1AM I make myself a Makers Mark drink. I mean, I poured some Makers Mark in an empty Rocks Glass and drank it. Wow. I'm feeling really good. I decide it would be best to go to bed. I immediatly crash and start dreaming. I pull my self out of that semi-unconscious state. And mumble to Dani "Too much alcohol might not be a good idea." I crash and wake up around 10AM.

Wednesday I did nothing. We drove to Safeway and bought Gatorade. It's a 15min walk but we needed to get enough to last me until Monday. I drink three-four 32oz bottles a day. Didn't want to carry all that.

Random thoughts coming out - I eat so much and am just maintaining my weight. I'm a 5'8", 152lb hella sexy man!OK. I've had 2 beers but no Vic. since 5ish. Might not have another one tonight. Dani bakes cookies, chocolate chip, all the time. I don't usually have an appetite but I eat 3 meals a day and eat "crap" after dinner. Cookies, Ice Cream, whatever. All Organic, mind you.

Side note - to those who have heard "Sugar feeds Cancer" I say Thppppppppppppt! I don't get a lot of sugar and maintaining your weight=healthy=kicking cancers ass. It's probably the most important thing you can do while fighting Cancer. I probably wouldn't eat enough if it wasn't for Dani. God Bless her.

Dani gets so excited when I want something fattening to eat. I can gobble her cookies in no time.

I've gone on a sausage fixation lately. Haven't had it for years. Mind you, whatever I eat, Dani knows the Farm it came from and probably the farmers. Not even sure if it's fattening. It's healthy, it's full of protein, I'll be done with HL in no time.

I do hate Wednesday b/c I'm starting to hate Treatment Thursdays. It takes too long and it doesn't feel great. Especially the last drug. You just want to pull out the IV to stop the discomfort.

Oh well, Christmas is almost here! Yay. we have a beautiful Tree and I think this will be the most wonderful christmas ever. On that note, Goodnight.

I get to the Dentist at 10AM. Before they start on my root canal (upper left) I ask them to check out the upper right tooth bothering me. An X-Ray later reveals the good news: need a Root Canal. I wasn't shocked. They worked on my first problem tooth with no real discomfort. before they started on the 2nd I needed to use the little boys room. As I pass by another room I seem to spot Dani in the chair. "How odd", I think. She does hate her current dentist and really likes mine, though.

After coming back from the little boys room I decide to stop in and see what's up. Dani looks up and says "Hey. They offered me a cleaning and X-Rays for $30.00! Will you be done soon?" "I don't think so", I responded, "If you get out before me, call my onco doc and see if I can take Vicodin."

I think I'll be needing it.

I go back in looking forward to a new root canal. I have to bite down on the "Bite Guard" with the left side of my Jaw. The side they just finished on. It doesn't hurt now because of the Novocaine. Figure it will be feeling really good when the drugs wear off. They work on my right tooth. After they "finish" my Dentist seems unsure. Love that. She takes some X-Rays and it looks like the screw isn't in far enough in one of the canals. She has to do a redo. Yay.

After 2 Hours, they finish with me.

I leave the chair and ask for a Vicodin Script. I tell her 'Yes, My Onco Doc said it was OK.' I don't know yet. If it's not then I won't fill it. She gives me a script plus a 6 pack Vicodin sample bag. Yummy. My left tooth started hurting before I left the chair. I'm not gonna mess with my chemo, however, so I don't even consider taking the Vicodin.

Dani has no Cavities.

At 1PM I get the go ahead to take Vicodin. Take them also at 5, 9, & 1AM. I go to bed with my left tooth killing me. Teeth suck. The Vicodin overcomes the pain the next day. Wonder what it would have felt like without Vicodin???

I Love to backpack! Won't be doing it anytime soon. I figured I should put this in b/c it's my biggest hobby. God forbid someone pulls up my blog looking for bp talk and there's nothing! So here's where I've been:

Monday, December 19, 2005

Wednesday, 12/14/05I wake up exhausted as hell. I don't sleep long or well much anymore. I roll over. I get this huge head rush from doing it. "Odd" , I think to myself. I roll over again. Same effect. The movement is causing dizziness in me like nothing before. And I'm still in Bed, Horizontal!!!!! "How.....................interesting". I do it a few more times for the hell of it and then decide to get some coffee. I worry that I'll fall over if I stand up to quickly but I can't move quickly so all's good. The side effects of Chemo seem to be hitting me the hardes 6-7 days after the injections.

Dani & i have a very Lazy day. We fight mostly over the laptop. She mostly works from home and I mostly sit at home playing on the laptop. This can cause some friction. :) Especially since she has a Press Conference coming up and I believe that might be stressing her out. We are suppossed to go to her friends Courtney Apt. I feel like ass, dizzy & fatigued. But I feel we should get out. We used to go out all the time, now we hardly ever. Dani worries about my cell counts a lot. I worry about Cabin Fever a lot.

We go. At the apt with Courtney is another friend/co-worker, Lauren. We sit, we eat, we drink Wine. I drink............slowly. Alcohol still seems to disagree with me. I get very lightheaded after 1 glass. I'm a little confused by the conversation. I then realize it's a meeting. It's a meeting regarding a Fundraiser/benefit for me.

I'm at a loss for words. If I think too much about it I might break down. I just sit there and listen. This is Courtney's & Laurens Gig. It's also an area they seem to have some experience in. Dani suggested the idea but has no time for it. They seem to be confident that they can find a bar, 1-2 bands, and door prizes, all donated. Possibly even the bartendars tips. Once again, I'm stunned.

Thursday, 12/15/05Blood Day! I hate Blood Day. This day doesn't go well. The Nurse sticks me and there is a burning sensation after she pulls the needle out. I think nothing of it but later there is pain in my arm. It's weak. Ever wake and discover you were sleeping on your arm? It has that feeling. Plus the pain which seems to be focuse in a discreet area of my upper arm. It will continue at least through the weekend. I decide not to bother the oncall oncologist, I'll bother my onco-nurse on Monday.

No call. Once again, my cell counts are fine. Small victories.

Friday, 12/16/05Dani has to go into work for the afternoon. plus they're having the Company xmas Party at 3PM. I need to shop for her so all is good. I need to shop in the Dupont Circle area, @2miles away. It's quicker to walk than take metro so I do it. I do my thing at the one store I need to be at and I'm done in no time.

All the Women are jealous, yes? ;)

Anyway, it's just after 3Pm and I'm only a few blocks from Dani's work Place. Xmas Party. Free Food & Drink. Why not? I pop over, grab a beer and sit with Dani. Dani introduces me to several people, including her Boss. I shake hands but never get up from my chair. We leave around 4:30 and walk home.

That's more "exercise" than I usually do. I did push my limit and I'm very tired. Pathetic, no? I'm a backpacker. My old "comfort maximum" was @8 miles over difficult terrain with 30-35lb. pack on. Now, 4 miles on pavement with sneakers and no pack wipes me out. four miles over 4-5hrs no less.

Pathetic. Chemo takes a bit out of you.

At home I go to the bathroom. I look in the mirror. I look hard and long. I see it for the first time. I think: "Why didn't I see it before?" I come out and "confront" Dani:

Phil: "Dani, I need to ask you something and I need an honest answer. Please don't hold anything back."Dani: I hate these questionsPhil: I look sick. My face shows it, doesn't it? I don't act sick. But I look it. Yes? Women see these things. They notice changes men don't. I didn't, or refused to notice.Dani: Yes. Courtney pulled me aside and said you looked really tired. You look sick. But that's to be expected, you are sick. And I would never not be honest with you.Phil: Thank you. And I know I can trust you to be straight with me.

My face is completely fat-free. I'm pale like never before. I usually have black bags under my eyes, wrinkles. It looks like there is some black above my eyes. It's my eyes where you can really see it. See my fatigue.......my illness. Other "new" symptoms:

I haven't had a haircut since mid October. I don't need a haircut. My hair grows fast. Within 4-6 weeks it looks moppy. Tis not the case. It has stopped growing. I run my hands through it every day, a few times. Expecting a handful to come out. Nothing yet. The hair on my legs has thinned slightly.

*NOTE* - I'm sorry, I might be a little drunk. I thought my body was rejecting alcohol but I was wrong. It rejects Wine & beer but whiskey seems fine. It's almost 2Am. Makers Mark is fine. ;)

There's a Party to go to today. Dani worries about my fatigue and my ability to fight infection. I reiterate that my cell counts were fine on Thursday, I need to get out and mingle or I'll go crazy. We go. it's only a few blocks away and its a benefit for a Social Justice Organization. It's a House Party with Bands. We get there, drop a $20, and push through to the Miller lite/bud light Kegs. We don't drink much. Beer just sucks now. Sucky beer really sucks. we go to the "music" room. It's a Spanish Band. No hablo. Dani does, though. We start Dancing. we have never danced with each other before.

I watch her move to the music. So gracefull. So.........enticing. Her eyes melt me. I fall in love with her again. We dance. Unfortunately I can not dance the night away. My knees hurt. They hurt as soon as we got there. I can go on no longer and so we leave. Oh well, it was enough.

Sunday, December 18, 2005

12/12/05Dani wakes up early. Dani always wakes up early. Mostly. Always by 6AM before I got sick. Now mostly before 8-9AM. She gets me an emergency 12:30 appt. for that day. Why don't people go to the dentist more?

Because: Dentists almost always cause you some kind of pain. MD.'s generally only cause a little discomfort while squeezing you and maybe give you some pills to feel better.

The office is.........odd. Lots of glass everywhere. You can see "work rooms" from the waiting room. You can hear Drilling from the waiting room. I really want to leave. I have to fill out forms and give my life up:

No Insurance.Scripts I'm taking.Cancers I have.Chemo I'm doing

Blah, Blah, Blah.

I get in the room with Dani. The put me in an exam chair with a flat screen Dell TV/PC thingy. They take pictures which show up immediately on the PC and then we get to watch TV. SNL on Comedy Central.

Later the Doc comes in with the good news: Shows my tooth on the PC and says those words everyone wants to hear: ROOT CANAL.

Root Canals Suck. I had one that was really bad before this. They could not give me enough Novocaine. I felt everything as they pulled out the nerve and flushed. This one isn't as bad but I know it will suck.

I notice everyone is kind of looking at us with a little...........pity perhaps. It's the Cancer. It's the surgical scar on my neck from the lymphectomy. maybe they don't see a lot of Cancer patients? We have started to call this the "Cancer Card". It trumps a lot.

The Main Dentist comes in with an estimate of the Bill. @1200 for the RC, @2800 total with the Crown/Cap thingy. I tell him I will have to ask Dani if 'we" can afford it. I give him my look of my God-we-have-a-lot-of-med-problems/money-problems.

Cancer card.

Dani had to leave the room. She needed to call my Dr. The Dentist asked if I needed to be pre-medicated before work can be done since I have cancer. "I dunno" was my response. And that I was already taking Sulfameth/Trimeth 3x/wk. The Onco Nurse called Dani back and freaked out that i was getting dental work done, worried that I might get an infection. Dani, gave it right back. Plus, she said, the tooth was already infected, should we let the infection go?

Love that Women.

Dani comes back and looks at the estimate. She has a worried look on her face. Not from the money but from the overzealous onco nurse. The dentist offers to knock one of the fees off.

Cancer card.

Dani takes the estimate to the receptionist desk. Meantime, They start the party in my mouth.

Dani asks if we can do some kind of payment plan. The receptionists asks if we want to pay it in 2 or 3 payments. Yeah, that helps. Dani asks for a monthly plan. Sure, if we get approval for a "dentist credit card". She does. I wouldn't have. Thank God.

I won't bore you with the gruesome details. I have a high tolerance to locals. I lost track of how many shots they gave me. It hurt some but I was happy. You ever notice that you grip the chair expecting pain? Or is that just me? While they worked I noticed I was feeling pain in another tooth. Yay.

As I leave the Doc offers me a script for vicadin. Not sure if my insurance will cover that so I refuse the offer. I have some Tylenol 3 from my lymphectomy I can use for pain. Everyone there says goodbye to us and wishes us luck.

Cancer Card.

Dani wants to go there now. The Doc didn't Tsk Tsk me for the condition of my teeth and he had a great sense of humor. Can't say I've ever had such a pleasent experience at the Dentist. I mean, minus the pain.

Real Time Post - 12/18/05 3:40AMLittle drunk right now. Please forgive. It's the Insomnia. Sometimes I get so pissed offand more than a little upset.For no reason.I was so proud of my immune system. I would brag. Infectious disease mostly never bothered me. I grew up with 3 brothers of the same age group. Flu/colds would hit my family. I've had the flu once in my life, for a day. I can go years without so much as a cold. Diverticulitis is a condition. Most likely caused by stress and low/no fiber diet up to that point.

Now this.

Hodgkins Lymphoma. A rare Cancer. No Identified causes*. No known risk behaviors associated with it. Blaming someone afflicted with such a disease is like blaming a victim that had their house broken into.

It's not my fault.

yet i get pissed off. One of my cell lines mutated. One of my immune cell lines mutated. Mutated and was not destroyed in time by the rest of my immune system. Mutated and suppressed the rest of my immune system. Mutated and disguised itself against my immune system. A Traitor. It didn't "choose" this path. But it is a traitor that must be destroyed.

Like all Cancers, I believe, it is one cell line only.

One cell Line, losing it's growth inhibition. Losing it's mortality. That's all Cancer is; uncontrolled cell growth. That one Cell line can become so dangerous is mind boggiling.

That it is of my immune system, makes it very troubling to me sometimes.

It's not my fault. I will win but sometimes....................I'm pissed off it happened at all.

Saturday, 12/10/05.I'm in DC Metro (subway) waiting for a connecting train to take me home after a horrifying trip to the Mall (Pentagon City) for xmas gifts. 'Tis the only time I go to a Mall. If there wasn't one on a metro stop, I would never go. The trip took all my strength. I fatigue so easily these days. I'm waiting and this pain hits me hard. Not the first time for this particular problem but by far the worse pain to date. It's my "tooth", whats left of it. The filling had been chipping away for months. No insurance so ignore it, correct? I squat down and put my face in my hands, squeezing my head. The pain travels to my temple. It's intense and I have no pain killers on me. I wonder if I should go out and grab a cab, maybe it will be quicker? But I can't remember what station I'm in. I can't think straight. The pain plus fatigue won't allow it. I read the sign: Gallery Place/ChinaTown. Might as well wait the 5 more minutes. I'm only a few stops away and then it's a 3 block walk to our Apt.

I get home and we have Company. Dani's friend & co-worker Courtney. Dani looks at me and asks "Whats wrong?". She can read my mind. I also have a very expressive face. I tell her and pop 2 Tylenol. I go into my Backpack 1st aid kit and pull out my Anbesol. Coat a Q-Tip and shove it in to the hole in my tooth. Ahhhhhhhhhhhh. Sweet instant numbing relief.

Dani goes into action immediately. We have to take care of this now. She suggests the ER but I'm thinking they'll just pull it. I convince her, sort of, that I can wait until Monday and go to a dentist, if she thinks we can afford it? She says "don't worry about money".

We are both worried.

At this point, my funds are gone. I'm jobless, hoping to get disability from SS. Although she says it's our money, and I completly believe her sincerity, I feel guilty. Up until November, I was pretty well off. I was flinging money around, always generous. As was She. Now I'm broke but We are not. Still, it hurts. And I know we are hurting.

Anyway, Dani does some research and comes up with 5 dentists for me to call on Monday.

Saturday, December 17, 2005

Thursday, 12/8/05Chemo Day and I'm feeling good. Excluding the itching, most of my secondary symptoms have been significantly reduced. My cough is almost gone, my outer lymph nodes have shrunk, and the outer tumor in my groin has also been reduced. My appetite is back and I can eat anything.

Off to the Hospital. I give blood every week for testing so they can check my cell counts. Chemo can wreak havoc on Blood cells, White & Red. Or maybe Lymphoma chemo wreaks Havoc on Blood cells since blood cells cause Lymphoma? HL is caused by the immune cell type classified as an Antigen Presenting Cell; a scavenger that looks for invaders and, ironically, Cancer cells.

Anyway, I have to give blood on the day of chemo, if my cell lines are too low I can't have chemo. If the White cell counts are too high, indicating an infection, I can't have chemo. It's vital to get chemo every two weeks (to the day) to fight the Cancer. But they have to "fix" the cell counts first, then more chemo, which may "F" up the cell counts.

Nice potential Catch-22, no? Can be deadly, I suppose.

Needless to say, I'm very happy when I get the go ahead for chemo. I'm also very happy on non-chemo Thursdays when I don't receive a call after giving blood. No call=cells fine.

I give blood and then I have to see my oncologist before treatment. He is amazed to here that my secondary symptoms have almost dissapeared. He is quite amazed at the reduction in my multiple swellings and utters the words "early remission". I am hopeful but will not "plan" on it. He notes my cell counts are "perfect".

I start a discussion about my violent vommiting episode and tell him I suspect I didn't receive any anti-nausea medication during my first treatment. Chemo treatment appears to have a strict treatment protocol; the infusion nurse shows you each drug and has you read your name off of them before treatment starts. I've worked in Pharma & BioResearch so I also read the compound name and dose volume. I only remembered the ABVD drugs, nothing else. He insists I received the drugs. The Dr. informs me that he'll increase the anti-nausea drug volume (the "obvious" problem) and I'm off to the Treatment floor.

Treatment usually occurs in the Infusion Unit. they are overbooked so I get to go to the Bone Marrow Transplant (BMTx) Unit. This is not a fun place. Unlike the Onco Unit which is just one big Pahr-Tay. ;) Honestly, though, BMTx patients are in a "sterile" unit for up to 6mo. or so. They have there immune systems wiped out so they need extra care. I might go nuts if I need one!

The Nurse is very happy to see us. Dani & I are fun, have great senses of humor and won't let a little Cancer change that!

Now, we wait. They won't make the drugs until you arrive. They need your weight and the OK from your Dr. that your healthy enough. So the first Nurse tries to stick me in the meantime. I have great veins. Hitting mine is like hitting the proverbial wall from the inside. My veins seem to "roll" though. They seem to "roll" for only the idiots that can't stick me. At least, they are the only ones to inform me of this skill of my veins. Our once happy Nurse goes and gets another happy nurse. The new happy Nurse looks for a long time and sticks me. I, am not feeling so happy.

To be fair, they need certain veins b/c of all the crap they shoot in me and it is a big needle. I will ask for gauge size next time. And my veins do tend to Roll. :D For any of my ex-coworkers in the Pharma field who may read this: Remember those giant needles we stuck in the New Zealand White Rabbit ear veins? Same exact needle I think.

Karma?

Happy Nurse1 comes back. We are still waiting for my drugs. In the meantime. I ask here about the anti-nausea drugs and how much more will I be getting? This seems to confuse her and she calls my Dr. We wait almost 3hrs for the drugs. Too long. Someone F'ed up. Thank God they have cable.

Happy Nurse1 comes in with the drugs finally. She has me read my name off the labels. I do so off the ABVD's and off the lable for Zofran and Dexamethasone!

Dex. is a Corticosteroid with anti-nausea capabilities (among other uses) and Zofran is an anti-nausea drug specifically designed for chemo treatment. Absolutly positive I was not given those during my first treatment. I'm so annoyed they could "F" that up but what can I do now? Nada.

They give me my test bleomycin sample. This is the "B", an antibiotic. Many people have an allergic reaction so they test for it during the first two treatments. If you have an allergy to it they give you massive amounts of benadryl in an attempt to "trick" your body. It's a critical drug - no replacement. I pass again.

I get two of the drugs injected by the nurse slowly over about 10minutes. The third is done mechanically for 15minutes. The fourth is an hour. I would hate to do this with no support. Thank God for Dani.

The fourth one hurts after awhile. It's a lot of stuff they pump into you. It's also the drug doing it's thing. Unfortunately, a little pain over time and during this procedure, seems to hurt more than it should. Maybe because you know it will happen every time?

The worst thing was how long we were there. Maybe 6 hours. They brought me food. I ate some to be polite?????????

Why do Hospitals feed sick people such crap? It's almost surreal.

From now on, we will pack food just in case.

So we leave. No chills. No shaking, no vomitting. We go home and eat. Dani's work place is very liberal. She works from home now so she can take care of me and keep me company. She worries so much. I love here so.

I think that might be it for 12/5. I'm tired as hell but wide awake. Time for some drinks.........I hope. Don't really have an "appetite" for alcohol. That's one of the worst side effects. ;) Get nauseas easily if I drink too soon after chemo. I think I might be babbeling.....as usual. Goodnight.

Friday, December 16, 2005

The Lymphoma didn't really hinder my activities until my nodes started to swell.....I mean, swelled so I noticed them. After that, things have kind of sucked. So my life has kind of sucked since 11/4/05.

Except for the fact that I'm getting better. But, as most know, getting better in regards to Cancer can feel like a**. Does feel like a**.

Most times, so far, I feel fine. When I'm on the couch doing not much.

I had to go through more testing before I started treatment. The Bone Marrow Biopsy was by far the most pleasurable. As in physical....."sensation". The full body CT scan in which I was given an IV of radioactive s***, along with drinking 900ml of tastey radioactive s***, followed by a radioactive Enema was also quite pleasurable.

BTW - since the hospital (and before chemo) I've been:

1. fighting a fever 2-3x/day. I can/have spike to 102 in 45minutes. Its not an uncommon symptom for advanced Cancer (and easily treatable with Tylenol) but it can create a problem in the future when I have no immune system and a fever is "usually" the first indication of an infection.

2. I'm always cold. Except when I'm hot. I hate venturing outside into the cold. I seem to be more sensitive

3. The Tumors pressing on my Lungs/esophagus have made breathing slightly difficult. This has made outdoor activities "difficult". I also developed a cough that can become so violent that I vomit from the force. No nausea at all. Its like my body is trying to force the Tumors out. Sometimes I take a drink at the wrong time and spew it out everywhere. I can't predict the cough. I spewed a shot of GM onto a bartendar friend of mine right after I was released from the hospital. :) I can't laugh. If I do, I'll start coughing. Dani compares the cough to sick Sea Cows. That made me laugh the first time I heard it. In fact, I coughed so much I thought I was going to die.

Laugh and Death Loses. Smile and I win.

Damn I'm deep

I am not telling y'all this for pity or as a badge to wear. I find it interesting and I like to tell stories.

4. My body has become specific in what it will eat. I could no longer stomach my high fiber diet (See Note). I tried with little success. I couldn't eat a bowl of raisan bran without almost puking half way through. It's the oddest thing. I eat what I want. No lectures, please. Dani is an expert and I still eat nutritiously and try to eat as much as I can. However, I'm down to 143lbs. I guess it's unadvoidable? I have been steady at 143 for 1-2 weeks.

*NOTE* - In 02/2001 I was "stricken" with Diverticulitis, a disorder of the Large Intestine. Rare in people my age (32 at the time). I will have to have that section removed sooner or later. Currently, I control it with a High Fiber diet only.

I look hella sexy....except for that Skeletor like look of my face. Believe it or not, I did have some fat in my face. But no, the obvious veins near each temple are not more prominent (Inside joke).

Still, I'm hella sexy. :)

SO! ON 11/23/05 I GOT MY CHEMO!!!!!!!! YAY!!!!!!!!!!!!!!!!!!!!!!!!!!

We were really excited. It had been such a struggle to get treatment. All I wanted was treatment. It wasn't easy and we were both stressed and scared. I didn't have insurance. I was a bartendar and couldn't "afford" it. No lectures please, it happens. Thank God, Social Services of GWUH & GUH, combined with an efficient DC system(????) and I was able to get medicaid within 1.5 weeks. It usually takes 6 months. It's sad, but I could have died for lack of insurance. Died slowly.

I was given the classic ABVD protocol for HL. Who wants to know what that is? It's 4 drugs injected into a vein. Google "ABVD Hodgkins Lymphoma" and y'all get what you want. :)

They squeezed me in. I was done with my chemo around 6:40PM. They were not concerned with side effects. I jumped up from the chair and Dani and I headed out.

I felt cold. It was a long journey to my car. We got to the parking garage and I started to feel nauseas. I asked for a pill from Dani. She had picked it up while I was doing the chemo thing. Prochlorperazine. I got to the car and started shaking. A chill to the bone. I started one of my sick Sea cow coughs. Dani went and negotiated with the parking dude b/c we had not gotten our parking validated. She won as usual. He could also see me. I looked bad, to say the least.

We get out of the lot and I make it 3 blocks, to 35th & Reservoir Ave. NW. Look it up. Very nice, rich neighborhood smack in the middle of Georgetown.

I pull over and open the door just in time to projectile vomit. I get out of the road and continue to vomit in front of this beautiful row house. It's a loud, violent vomit session. The lights are on at the row house. No one comes out or to the window. I think to myself; "I wonder if they get this a lot?".

I finish for the time and continue on. I'm controlling every aspect of my body from shaking except for one, my head. It's comical. I guess the shake has to go somewhere. I need my body to control the car. My head is shaking from side to side as I do my best to keep my eyes on the road.

Dani could not drive for several reasons.

We get home and I start puking as soon as I get out of the car. I continue for a while. Time is meaningless. I get myself to the bathroom so I can continue with the festivities. By this point I'm severly dehydrated. One of the last things you want after chemo. I take a drink of water and vomit. I wait. There's no way in hell I absorbed the first anti-nausea pill so I take another one with the smallest amount of water possible.

I vomit.

I vomit some more.

I take a mouthfull of Ginger Ale.

I vomit.

I'm so f'ing thirsty now. I feel like I'm in Hell. Any movement makes me want to vomit. Any smell, any thought. I closed my eyes and thought I was going to vomit.

I vomited some more. All I want is some water.

Meantime, Dani is frantically hunting down the oncall Oncologist. She calls in two scripts to our local CVS and Dani is out the door. It's snowing. I learn later She has to walk. It's Thanksgiving Eve and she doesn't encounter a single cab. Again, I have no sense of time and don't know how long she's gone for.

In the meantime, I vomit.

She gets back and I've managed to crawl into the bedroom. I'm on the floor. She has two drugs for me. One is an Suppository anti-nausea drug. I mean, I couldn't keep anything down so a new route was needed. An hour after I jammed the tiny bullet up my bum I was to take the other drug, Zofran, Orally.

I laid there after the deed was done. I was sicker than I had ever been. Thirty minutes after the Suppository Dani was lifting my head off the pillow and giving me a mouthful of water. It......stayed......in me! I was dying of thirst but afraid to do more.

I took the Zofran as time expired. Dani put me to bed and left the room. I didn't want to sleep. If I didn't get rehydrated I had to get to the hospital for some IV.

10minutes later I walk out to the living room. Dani's on the phone, crying, talking about getting me back to the hospital. She looks up at me in disbelief and I say: " I could really go for some Ice cream right now."

Complete turn around 10minutes after the Zofran, 40 minutes after the suppository. From the sickest I had ever been To eating Ben & Jerry's within 15 minutes. God Bless SmithklineGlaxo & Zofran!

11/30/05My side effects from the chemo have been minimal since the puking. Fatigue, shortness of breath (both after being out and about), some joint pain, and a somewhat obnoxious sensitivity in my mouth. That one didn't last long and I hope it doesn't come back. Although, I'm thinking it might get worse with more treatments but I'll worry about that when/if it happens. And No, I'm not bald..........yet. Nor have I lost any of my hair....yet.

So yes, I'm bored. My symptoms have kept me from being anything but "slightly active".

Thursday, December 15, 2005

A friend suggested I start a blog since I have so much time on my hands now. I'm a newbie, so bare with me. I feel the need to explain myself. My life has changed, rapidly. Beginning this past November, 2005:

Downsized by my Company last March. More annoyed with them then my previous employer, I decided to give my profession a break and work in a Restaurant for a while. My Banff trip in August was a bust and it really knocked me for a loop. It was my dream Backpacking Trip. I've always lived in the East and fell in Love with the Rockies last year while backpacking Glacier NP. I planned a trip with five others from across the Nation. It was my trip. My plans. It took maybe 6 months. I was trip Leader. I flew into Bozeman, MT and met most of the other backpackers. We drove to the border and I was refused entry from an overzealous Canadian Border Guard. One of our comrades was waiting for us in Banff. The other four decided to go ahead without me. I couldn't blame them. Some had traveled as far as I had.

I fell into a deep funk. Then it "started".

I haven't been feeling well for a while but it was very low on my radar, nothing was screaming at me. I've been itchy for 6-9 months but I thought it was dry skin. I had a persistent cough (mostly at night) with minor, clear, sputum, and I thought it was a smokers hack.I would feel slightly feverish every once in a while but it would go away. My digital thermometer never indicated any fever.

I quit smoking in September. Mostly. Kind of. I had quit before. The longest was for 3yrs. This was difficult. I was a Bartendar at the time. So hard to tend bar and not smoke. But I did my best. I went from smoking 1-1.5 packs/day to 1-3 cigarrettes/shift. Hoping I could kick it completely.

Then came Halloween Eve. I was shaving and noticed my left cervical lymph node was the size of an egg. Big deal, I thought. I have an infection. Six days later I noticed two swollen lymph nodes in my groin......F***, I thought. That's bad. That's really bad. I tried not to think of it.

I called my doctor at 8AM the next day and they squeezed me in for 9:30AM.My doctor found swollen nodes all over my body. He ordered a full blood work up, check for CMV & EBV, and an X-Ray. He wanted to do a CT scan but knew I was uninsured.$560 dollars later he looked at my x-rays and immediately sent me to George Washington (GW) University ER across the street.

November 4th, 2005

The x-ray was "highly abnormal". Looked like Lymphoma but could also be several types of "exotic" infections.

4hrs of waiting and I get a room.

The ER doctors were obviously fighting over the diagnosis. Some wanted to know everywhere I had been, especially if I went out of country. A student was convinced I had lymphoma, and told me so in the most unprofessional way. If I could find here I might wring her neck. The talk of Cancer was upsetting my soon to be Fiance more than I.

They took several blood samples, started 2 antibiotic drips, and scheduled me for a CT scan. I had a slight fever but was feeling fine and was hungry as hell. They all seemed confounded by my chipper state and the fact that Dani* & I had just gone on a backpacking trip 3 weeks ago.

*Dani is the love of my life and my future wife.

About 6 hrs. in ER and the results came back. Most likely I had Lymphoma. They wanted me to stay in the hospital so they could start right away. Outpatient would be more difficult to schedule tests for.

They take me to a private room where Dani & I shacked up for 3 days. Only once did a nurse dare to announce visiting hours were over. Dani gave her a "look". Needless to say, Dani stayed.

I was still feeling fine in the hospital. They never hooked me up to anything, not even a saline drip. I was given 6-8 Tylenol for my fever and thats it. Dani and I mostly slept, waking up only for the damn internists, internal & surgical students. The occassional doctor, getting my vitals taken, and eating. Dani would pop out for some Whole Foods Goodness, which is what most likely kept me healthy in the hospital.

Come Monday Morning, the Surgeon took my left cervical lymph node out. They wanted the whole thing b/c they were still not convinced it was Lymphoma.

A few hours later an Oncologist paid a visit. Preliminary Pathology indicated Hodgkins Lymphoma.

I needed a PET Scan, MUGA (heart strength), Pulmonary Function Test, and a Bone Marrow biopsy ASAP to start treatment. Social Services had visited with Dani while I was in surgery. These tests were going to cost a fortune and I needed coverage.

We couldn't wait. Dani scheduled all the tests within the week and I followed her, kind of in a daze. Dani paid for the tests, somehow getting 50% off the MUGA test, knocking the price down to $500. PET Scan's are hella expensive, by the way.

Thursday, we see "my" Oncology Dr. He confirms Stage IV Hodgkins Lymphoma, and says the Bone Marrow Biopsy is unneccesary, it's also affected. He wants me to start treatment within days, and classifies me as completely disabled. I have to quit my job. I will be somewhat immunocompromised. Unfortunately, George Washington no longer accepts DC Medicade.

After that, Dani went on a mad scrammble to find a decent doctor. I have an appointment in two days at Georgetown's Lombardi Cancer Center.

I can't over emphasize what Dani has done since my Surgery. She has done in a week what I couldn't have done in a month. From paying for tests, to filling out forms from hell, to getting me into G'town. Which, btw, first gave here a date in late November. That wouldn't do for her, so she pushed her way through for me.

So that's where I stand. Hopefully I start Chemo (ABVD) within the week. The treatment is bimonthly for 6-8 months. If anyone is interested in my diagnosis, it's below. I have no doubt that I'll beat this, if you had to pick a Cancer, this would be a good one.

TTFN! :)

'Scuse the med speak:

FULL BODY FDG PET (scan) WITH CT (scan) FUSIONPETimages of the head and neck demonstrate intense FDG uptake in the tonsillar regions and in the nasopharynx, as well as multiple bilateral foci of intense FDG uptake in the upper and lower neck, compatible with malignancy.

Tomographic images of the chest show multiple foci...fusing with right and left auxillary lymph nodes, compatible with malignancy.

Multiple foci...in the mediastinum, the largest fuses with a large mass in the right peritracheal region....malignancy...

...left iliac bone near the the left sacroiliac joint...right ischium......malignant skeletal involvement...

no definite evidence of malignancy in vertebra...

Impression:1. FDG PET compatible with extensive tumor adenopathy above and below the diaphragm. There is apparent tumor adenopathy in the head and neck, chest, abdomen, and pelvis.2. Compatible with malignant involvement of both lungs.3. Compatible with malignant skeletal involvement of the right ischium and left iliac bone mediallly.4. #&%!$ is probably in the bone marrow.*